What Brain Cancer is not…
May 24, 2008
First, my appointment at Moffit went very well. Nothing new to report. My labs were well within normal limits for someone on chemotherapy, and I am clear to start the next round of chemo Monday evening.
I have been watching the news about Sen. Kennedy, as have all of you, I am sure. Yes brain cancer is a devastating blow to the any person, and yes anytime you hear the word “cancer” there is a feeling of helplessness… BUT.
Brain cancer is not a death sentence, it is not all doom and gloom. There are tons of survivors who live way past the “life expectancy” of each individual type of brain tumor type. And there are tons of misconceptions regarding “life expectancy” in the media right now.
Lets talk about “Life Expectancy” and how they come to that conclusion. Take my type of tumor: Anaplastic Astrocytoma. “Life Expectancy” for my type of tumor is 3-5 years WITH treatment. How do they come to that conclusion? Those statistics are like a bell curve, an average of all the people with my type of tumor (from infants to elderly). So, that means that my “life expectancy” is based on everyone else who has my type of tumor. My oncologist at Mayo told me this : Take a classroom scenario using the bell curve of brain cancer statitistics: the A students get a C, and the F students get a C. The A student came prepared (had no seizures, no headaches, no symptoms) and the F student did not (had many many symptoms). Does that seem fair? Not at all, but it is just an average!
There are many many different things that go into life expectancy, such as age, symptoms, treatments, and genetic testing. I had no symptoms. They didn’t find mine because of a seizure, they found it because of an ear infection. There are so many people who look at life expectancy as the end all be all in their cancer journey. I knew one person who said “I have outlived my doctor given expiration date by 10 years!” That speaks volumes.
And lets not forget the most important things: OUTLOOK , ATTITUDE and most importantly FAITH. The first thing I did when I was able to sit at a computer was to look up survivor stories for my type of tumor. I surrounded my self with hope and was determined to remove anything and everything from my life (within reason) that caused me stress (thus my quitting my job etc) I removed everything that was negative in my life, and learned to say no.
I dove into my bible and re-dedicated my life to the Lord. I bought every devotional on cancer and Christ that I could get my hands on.
Do I believe I have 3-5 years to live? Absolutely not. I am not a statistic. Only God knows the number of my days. There are days that I feel like I have been cheated, but then again I am human. If you ask any cancer survivor, we all have those days. But what matters is how you face them.
And, selfishly, I hope that Sen. Kennedy brings alot to the table regarding Brain cancer. I wouldn’t wish this on my worst enemy, but I also know how little is being done to treat brain cancer and how little funding goes into brain cancer research.
And if, by chance, Ted stumbles across my blog:
I am praying for you. I can sympathize with what you are going through, and I know how hard it is. I know you are a fighter, and that is a great thing to have in your corner with this diagnosis. Keep fighting, and do not ever lose hope. I may not agree with you on politics, but we can both agree that brain cancer and its treatments are grueling and we must all pull together for each other and fight this monster. I am sorry that you have joined the club that no one wishes to join, but you are surrounded by people who have walked this road and care deeply about what you are facing.
Welcome to the brain cancer family, Senator. We are here for you.
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In other words: Play Nice
28 Responses to “What Brain Cancer is not…”
I would love to hear from you!
Just had to tell you that I LOVE your attitude Heather. You help me to maintain a proper focus on my own life and I’m thankful for that. Hope you and your family have a wonderful weekend. PRAISE THE LORD that your appt and labs are all ok! Love you sis!
Heather, I hope that you are correct about more funding being brought to the table. Like you said, we wouldn’t wish this on anyone, but sometimes it takes a high profile person to bring an illness to the forefront for attention to be paid to it (Magic Johnson - AIDS, Michael J. Fox - Parkinson’s, etc.).
So glad to hear everything is going well. I’ll be praying for you as you begin your next round of chemo.
Lori ~ Simple Life at Homes last blog post..R.E.S.P.E.C.T. , Part 6
Heather, you are such a beautiful and thoughtful writer. I loved this post. And I hope Senator Kennedy reads it!
Take care and be blessed!
Lauries last blog post..Nashville Weekend & Nashville Deaf and HOH Library
So glad to hear you are doing well Heather, we rejoice in your good news.
You truly have been blessed with a gift for words, my friend. Well said. I’m so thankful things went well for you and will keep you in my prayers, especially as you start another round of chemo. Hugs to you Heather!
Glad your news was good from Moffit I have you in my prayers often but I must say I was somewhat dissapointed in your post mentioning Sen. Kennedy Polotics I felt this totally unacceptable to even be mentioning your disagreement on his politics, this wI felt was not what our Lord expects people to say when mentioning someone diagnosed with brain cancer. It should not have been said because it takes away from your statement of concern I am sorry I might not agree with them either but my concern is for his condition without mention of his poitics this world needs to step away from people and what there politics are the Lord Im sure doesnt care. I have followed your story and have felt empathy for you so many times but I never expected someone of your Faith to mention such a thing in a post, I for one hope e doesnt read this post from you.
@Shirley : I am sorry I disappointed you with my comment about his politics, but I am not sorry that I wrote it. I do not think that it takes away from anything that I wrote. Senator Ted Kennedy is a strong man with strong beliefs, and that is why I said what I said…. I wanted him to know that even those of us who may disagree with him politically still stand by him in his fight….our fight, against brain cancer.
I am sorry if that offended you, it wasn’t meant to do anything other than what I described above.
-H
Heather…Thanks for all the great info explained so we can understand it!
Thank you, Lord that Heather has a good report but we want more! More than just having good lab results so she can tae more chemo…we need MIRACLES…we are learning so much from her. Just keep filling her up and loving her so much that
your glory will continue to shine through her.:angel:
Love your attitude, your strength in the Lord and even your weakness and always LOVE you being REAL and being YOU!:heart:
Bless you ad will be praying that Monday won’t be as terrible as any before and hopefully much better than ever with no beating
Blessings and be blessed with much music of all your favorites…Like the photo with your team!!!
yourself up…relax and rest and be strong&courageous (JOSHUA) Heather…for the joy of the Lord is your strength!
Peggy@Mazes, Messes, & Miracles….s last blog post..Steven Curtis Chapman & Maria Sue:His little Cinderella
Hi Heather,
I am thankful that I am able to view your blog, It has given me hope in my life, I am daring to trust the Lord, and so far I have not been dissapointed when I do leave “it” with him.
Blessings,
Maries last blog post..
You just stinkin’ inspire me. Period.
boomamas last blog post..Must-Read
I don’t comment often on your blog, but I have been praying for you since you were first diagnosed. I have a dear friend whose son is a quadraplegic, the result of a diving accident, she hoped that the research brought about by Christopher Reeve’s situation would bring answers for her child. Who wouldn’t ?? Praying still.
Nancys last blog post..Well, except for that one little thing……
My aunt was diagnosed with a glioblastoma in the right temporal region nearly 3 years ago. Her life expectancy WITH treatment was 12-15 months. We are due to celebrate her 3 year anniversary in about 6 weeks. God is good and he doesn’t make statistics.
Keep on doing what you’re doing! :)
Shirley, I don’t know if you’ve noticed, but since Senator Kennedy was hospitalized and subsequently diagnosed, Democrats and Republicans alike have, proverbially speaking, “come out of the woodwork” to express their concern for and support of Senator Kennedy. I DO think it is worthwhile, for lack of a better word, to publicly state “what side of the aisle” a person is on while expressing their support of Sen. Kennedy during this difficult time. It only underscores the fact that, in times like this, political leanings are left at the proverbial doorstep, and people can and do come together, while putting aside their differences, to support someone as gigantic a public and political figure as Senator Kennedy is.
Heather, I was born in the early 70’s with Spina Bifida, which is a neural tube defect. Back then when I was born, my life expectancy was 30 years. I have outlived that by a fair amount, and I am currently in fairly good health. All my life, I have never, EVER put my complete faith in prognoses and life expectancy data. To do so would mean that I would be robbing myself of the life I HAVE already.
I am proud of you, Heather, for bucking the odds and prognoses and saying “I don’t care what the statistical averages say! I am going to live a good, long life!”
Hi Heather… Thinking about you and continued prayers and ((((Hugz)))) Aloha Lorie
Lories last blog post..Hold On Tight Sistah
I have to respectfully disagree with Shirley. I don’t know that I’ve ever posted, but I read your blog often. Anyone that has read ANY of your post would understand the view you were coming from. DESPITE whatever political standpoints you have, you have reminded us to pray for those in difficult situations such as Sen. Kennedy’s.
I’m so glad to hear your latest appointment went well. I love your positive attitude and how you give all the credit to God. Please know I’m praying for you and look forward to watching beat all the statistics.
Hugs,
Amanda
I would have said the same exact thing you said, Heather–the same way you said it. In fact, I was going to write this as my comment: I don’t agree with Mr. Kennedy in many things, but I GREATLY respect his family and their close-knit care for one another, being there for one another. This is coming from someone, like me, whose extended family is not there like that for one another. I SO respect their family. I have been praying for him and his family ever since I heard.
I am so glad that you had good results, friend. You are so very precious! You are loved!!
holly
Holly Smiths last blog post..Jubilant Majesty
I checked up on you a couple days ago and needless to say a comment wasn’t posted. I am so glad your doctors appointment went well.
k-
kates last blog post..Coming to a close
Respectfully to you all I still dont understand your views why you needed to mention the difference in your polotics He is a human bing with a Brain cancer he isnt a democrat or a republican white or black all I am saying is its was an unneeded remark to say I dont agree with your politics but in spite of that I wish you luck . My point it was uneeded it doesnt make you different from him unless you feel you are different from him only because of his politics Im sick of Politics I dont talk about it dont like to hear it mentioned with praying o the Lord for someone it makes it less . Please understand what I am saying . I have prayed for you so ferverently at times and your family and you know I never needed to know your politics or relgion it makes no difference we are all his children
Girl, I totally think you should figure out how to email him this post.
Jennifers last blog post..AND I plan to learn to samba!
Very uplifting, Heather! I hope that he does get the chance to stop by your blog.
Jeneans last blog post..No Detached Retina
Hi Sweet Heather,
I just wanted to come by say a prayer for you today as you begin another (last?) round of chemo. What a wonderfully insightful post this one is, I do hope Senator Ted finds you and in the process a closer (?) walk with Jesus. I have sent many here especially when the C word has popped up in their lives. You are inspiring and your focus has been Christ centered and honest, you surrender fully! Jesus is lifted up with every key stroke.
Because of Jesus, Bobbie
bobbies last blog post..Friday Show and Tell with CanadaGirl
I am glad things went well for you. Your comment about Sen. Kennedy’s “politics” shows me you are fairly ignorant about them. He has single-handedly worked passionately for over 30 years to bring Universal Health Care to Americans. If you are against that, you’re not following Jesus’s path to take care of the sick. Not everyone has good health coverage. I was laid off during my radiation treatment and am paying for my insurance out of my life savings.
Dianne in DCs last blog post..personality types
I love reading your blog Heather and I, as a rule, do not talk politics because it only gets people riled up. However, I think I need to make a comment.
I am a committed born-again Christian and a lifelong Democrat. The tennets of the Christian faith are much more in line with liberalism than conservatism. Quality, public education for all (not just the rich). A decent minimum wage. Tax cuts for the middle class, not the wealthy (no one making under 100,000 dollars a year benefited from Bush’s tax cuts, no matter what lies Rush Limbaugh tells his listeners). How many of your parents collect Social Security? If Dick Cheney and Fred Thompson had their way, they would get rid of it forever and many other gov’t programs such as Medicaid and Medicare.
I would bet most people who have commented on this blog are Republican simply because of its party’s pro-life stance. Well, I have learned in many 67 plus-years, there is more to being a Christian than abortion and gays. Sadly, that is what I see so many of my fellow sisters wrapped up in.
In addition, there are several staunchly pro-life Dems in Congress such as my Sen. Bob Casey (who has a 100% pro-life record from Focus on the Family), Nebraska Sen. Ben Nelson (who was endorsed during each of his re-election campaigns by Nebraska Right to Life), Arkansas Sen. Mark Pryor, Virginia Sen. Jim Webb, and Louisiana Sen. Mary Landrieu. Bobby Kennedy, incidentally, was also a staunch protector of the unborn and opposed any and all kinds of abortion, differing from his younger brother.
“Keep fighting, and do not ever lose hope. I may not agree with you on politics, but we can both agree that brain cancer and its treatments are grueling and we must all pull together for each other and fight this monster. I am sorry that you have joined the club that no one wishes to join, but you are surrounded by people who have walked this road and care deeply about what you are facing.”
I don’t know how this is offensive! It seems to me that about half of the Dem.s’ don’t agree with the other half right now. The way I read Heather’s post is that “IT” (politics) are of little importance now, Shirley, Diane in DC, and Jenn; you three need to practice what you preach and give a Sister some of that PRECIOUS TOLERANCE the Dem.’s are so proud to have the market cornered on!
You go Heather, and by the way this Rep. Conservative prays for Senator Kennedy every day!
Keep the faith Heather.
I am coming into this a little late. But, I have a couple of points to make. I believe, Shirley, that God DOES care about politics. I certainly hope he does. I believe he cares that the person leading our Nation is a Christian and/or supports Christian values when they vote. I also have to say that God is not a democrat or a republican, but He is pro-life and He is against Homosexuality. There are not very many democrats that are pro-life or against Homosexuality. Check thier voting records. Yes, there are other issues, that I won’t go into, but you have to look at someone’s moral stance and not just their political stance. Heather, God bless you, being a Christian is not always the easiest road, but you did the Christian thing here with your post. Thank God you did not back down from that!
Cheryl Andersons last blog post..Last Day of School
Heather, I read your blog when I have chance. I found you through “the Nester”. You are an encouragement to all and God bless you!!!!
To Shirley, Diane, & Jenn - get off your high-horse, it wasn’t about “politics” - don’t get so blasted defensive. Show some luvin’ - you’ll be alot more happy in this life!!
Heather thanks so much for being such an inspiration! I stumbled across this post today and thought it was very uplifting that you would reach out to the Senator and feel it is very disrespectful of people to judge you by your comments on his politics. Many times it is VERY hard for people, even Christians, to reach out to those hurting when they have different views. I think it is an amazing testament to who you are as a person and who you are in Jesus to be able to offer up your prayers for him. Thanks so much for standing firm and not backing down- Praying for you daily :)
Emily